It was all very sweet and good. But I miss the days when school plays were more entertaining – when some kid knocked over the set, sat down and cried, or stole the show. C’s kindergarten play was priceless. C was a pumpkin in a garden full of vegetables. He hated the hat he had to wear (sensory issues), and try as she might, his teacher could not get him to keep it on. He spent the entire play tipping forward, letting his hat fall, and then picking it up, putting it on, and starting all over again. It was hilarious. At the end of the play, C got stuck in front of the curtain and laughed with a joy and abandon that will forever make that video one of my favorite treasures.

     When I listened to C rehearse his lines for this year’s play and discovered his mistake, I admit to not working too hard to correct it. I probably should have; the mistake was irreverent in its tone, but the innocence of the misspeak was too cute to worry over. We let it go. To draw attention to it probably would have given C a self-consciousness he rarely exhibits, and we didn’t want to stifle any of his enthusiasm. So we held our breath when C proudly got up to the microphone and said, “With sheep, cattle, and a MANAGER, baby Jesus arrived on a very special night.”

     Honestly? I don’t think anyone really noticed. Everyone was so focused on watching their own kid I don’t think people really listened to everyone else’s. But Husband and I chuckled and reveled in the return to the joy that should be a school play. Complete with sheep, cattle, baby Jesus, and his own special manager.

     And there it is: the grand difference between us – the idea that the kids will work it out. Actually, mine won’t. Yours will – they’ll bicker and fight and be best friends again five minutes later. C, however, will often alienate kids because his negotiating, problem-solving, and compromising skills are significantly less developed than the kids around him. An argument over a ball can have life-altering consequences for C because your child won’t want to be friends with him after it’s over. Or C will lose it and start crying, and the other children will stare and snicker at his socially “inappropriate” behavior. And they don’t forget. No matter how many times you tell me that all kids do that, you simply don’t understand that my kid does it times ten. And the all kids you are talking about are generally half C’s age.

     This is where I get angry. Because if C lived his life in a wheelchair, you would do everything you could to make sure he is fairly included in every activity. But because his disability – and yes, in this area I have now painfully come to conclude that for C it is a disability in many ways - is invisible, no matter how much you talk to your kids about accepting his differences, they still don’t want to be around him a lot of the time. Friends who couldn’t get enough of him months ago can now hardly be civil to him. And he doesn’t understand why.

     Then I feel guilty for being angry. Because you have in fact talked to your children about accepting C’s differences. You have talked to them about being kind to him no matter what. Your kids are nice kids. What I’m asking of your kids is often more than I can do myself; I get just as annoyed with C as your kids do. He doesn’t back down, he won’t drop an argument, and he won’t give you your space when you ask for it. I, like no one else, understand how frustrating it can be to be friends with C, despite his endless kindness, thoughtfulness, and genuine fondness for simply everyone he encounters. You have to work really, really hard to be friends with C, and most kids just aren’t capable of that level of effort.

     Then I get angry all over again, because C is a kid who will play with anyone and include everyone. The same can’t be said for the rest of the world, and definitely not for the rest of the neighborhood. So I soldier on, facilitating interactions and trying my best to help the other kids relate to my own while at the same time trying to teach C how to navigate the social waters of life.

     One Mom summed it up by saying that we are trying to teach our kids tolerance. And while I agree with that sentiment, I’m not sure that I agree that any of us are having any real success.

     C has been asking for a couple of months now if he should check his name on santaclaus.net to see how good he’s been. But he hasn’t done it, and last night I found out why. While he soaked in the tub, we talked about our plans for the holidays. “I’ll bet Santa won’t bring me much this year because of my behavior,” he said, his head hung dejectedly.

     My heart broke more than a little bit in that moment. I couldn’t lie and tell him his behavior has been fine. It’s been a challenging year for sure: C’s behavior has rocked our family to its core, and I’ve read more books on defiant children than any parent should even know exists. I’ve collapsed on the floor in sobs too many times to count. And Husband and I have locked ourselves in our bedroom far too frequently in order to escape the wrath of C. Still, there’s nothing more heart wrenching than a child whose self-defeat is written all over his face, and all I could do was give him a big kiss on the forehead and tell him that Santa knows he’s been trying his best.

     Once again I was thrown into both the joys and sorrows of parenting this particular child. In the same moment, I was both impressed C recognizes his own challenges and sad that he feels his challenges are having such a profound effect on his life. It’s times like these when I remember that C carries the weight of the world on his shoulders, and there’s little I can do to help him shoulder the load.

     In the meantime, I’ll be trying to figure out just what we need.

     But swim team. Swim team. Basically, swim team – for me – means summer. I started swim team when I was barely five, and didn’t stop until a college without a swim team sort of forced me to. Swim team defined my childhood. I know better than to think C will follow in my footsteps, but I also know swimming would be good for him. He enjoyed the pool we had in Arizona; that is, once we actually got his little face in the pool. Then he became a fish. He loves the water and moves through it in his own unique way that is both effective and entertaining at the same time.

     The first day of practice, I was dismayed to see 35-40 kids, most of whom were about 6 years old, wiggling around and waiting for the coach to get started. It was chaotic at best, insanity at worst. There was much standing in line and downtime; generally the kiss of death for C. I watched as other boys, years younger than him, somehow managed to gang up on him within minutes of practice beginning. I had to intervene at least five times, and by the end of practice I had decided there was simply no way we could continue.

     I approached the coach after practice to explain why we wouldn’t be back. Too many kids and too much downtime, I rehearsed in my head, so as not to sound as though I thought the coach was somehow to blame for the situation. I started the conversation by telling him C has Aspergers, and did he know what was? “No,” he said clearly sensing that AS involved something that would make swim team challenging. “But what can I do to make C successful?”

     “What can I do to make C successful?” Seriously? I was stunned. I hadn’t even told him of my decision yet, and he was already trying to keep us there. I honestly can’t recall the last time – if ever – someone has said something like that to me. Here’s this coach, basically a kid himself with 35 overactive kids on his hands, wanting to figure out how to keep C on board. I explained a little bit of the problem, and his next comment was even better. “I can rearrange things so he’ll be more comfortable. We will do whatever we need to do.”

     It was only because of this conversation that C happily, and successfully, competed in his first swim meet last Saturday. I have the video to prove it. Thanks, coach.

     I admit to being at a complete and utter loss at how to answer this question, and it leaves me pondering just what it is I discuss with other people all day and how those conversational topics are set. Having to “pick” a topic of conversation reminds me of an awkward first date, because you know if it’s that hard to find something to talk about, the relationship will never work. Since this question mostly comes up in the car after all other topics are exhausted, I generally say something about just enjoying the ride and looking out the window. This seems like a cop-out to me, but I’m baffled as to what to say. I’m so used to conversation just flowing that being forced to think about how it does so renders me mostly mute.

     I’ve tried the conversation starters, and they work for a moment or two. Once C even surprised Husband and me by suggesting we share one thing we liked about our day over dinner. God love this child – he is trying as hard as is humanly possible. It’s not that C is trying to hide anything or doesn’t want to talk, but when I ask him what he did in Spanish class today, the answer is brief and full of the basics. He doesn’t talk about the other kids unless something major has happened, and he often misses the daily dramas that occur within the classroom around him. I pull as much information out of him as I can, but once those conversations die out, C somehow works Pokemon (or Mario, or plumbing, or trains, or whatever is his current fascination) back into the discussion, and I tend to fantasize about escaping to Hawaii.

     I’ve realized that despite being extremely verbal and talkative, C has very little “functional language.” A speech therapist told us this once, and I admit to not completely understanding her message. “C has much to talk about, but much of it has nothing to do with people, emotions, social interaction, or function.” Frankly, I think we were so happy he was talking at all after years of silence (verbal anyway…the days of screeching “Pterodactyl Boy” aren’t erased from my memory), we perhaps missed the fact that his language was missing some key components.

     Yet now, when I talk with some of the neighborhood kids, I realize how effortless conversation actually is for typical kids, and I revel in those moments of crystal clear communication. I’m amazed not only at what they observe (“Dog isn’t as excited to see me this time as he was last time, Mrs. P,” says the three-year old neighbor boy, while I stand there, mouth gaping open at his awareness and ability to share that information with me). Then C will say something to another parent about knowing what Wi-Fi system they have and whether their parental controls are set on the Wii and both of us have to chuckle.

     Fortunately, C is extremely charming. Dimpled and smiling, he loves to talk. He’s friendly, engaging, and often quite funny. He does have friends – actually, if he knows your name, he considers you a friend – although close friends are few and far between. At this age, where kids are starting to have relationships based on more than one shared interest, C is left standing conspicuously - and often painfully - alone. I hang on to the fact that his so lovable; adults love him, and my hope is that when his current peers become adults, they will love him too.

Happy Birthday, C!

     Every. Single. Year.

     As is his way, C tends to overdo, generally followed later by underdo. It’s sometimes entertaining and sometimes dangerous (like the kindergarten bathroom experience during his plumbing phase, where he got diarrhea so often it prompted him to ask me if everyone got it once a month). If nothing else, it’s always interesting.

     This time, it’s the Bible. We knew it would happen; his previous inexposure to church coupled with an immersion into an Evangelical Christian school would likely result in a soaking up of the information like a sponge. The Bible is appealing to C as it has lots of numbers, chapters, and short clips to memorize. I don’t even have to quiz him on his weekly Bible verse as he usually has it memorized on the first day it is assigned. C asks everyone their favorite verse. It is reminiscent of his weight phase when he was four and asked everyone he encountered – and I mean everyone – their weight. We were all too happy when that one passed. I don’t think I’ve ever explained or apologized as much as I did during that phase.

     But I reached my limit this afternoon after 20 solid minutes of Bible discussion – or more of a one-sided fountain of information with few spaces for breath - in the car. ”I don’t like Levicious (Leviticus) or Dotonony (Deuteronomy), Mom. What’s your favorite verse you learned by heart? I already know this week’s verse. It’s _____. Mrs. T’s favorite verse is ___, and I asked her if we could learn that next week. So the Jews like the Old Testament and the Christians the New Testament, right? I think I like the Psalms. I know Pa’s favorite verse. I’m not the nicest kid in the world, Mom, Jesus is. Whose name do you say when you pray, God or Jesus? I say Jesus or the Holy Spirit. Did you pray that Mrs. T’s smartboard would work today, Mom? I did. You know you should pray five times a day, don’t you? Do you? Pray five times a day? I do.”   

     I finally had to ask him to stop. I could barely get a word in edgewise. We’ve had therapists tell us in the past to stop him when he’s going on and on about a special interest, all while ignoring all the cues from other people who have lost interest long ago. We’ve also had therapists tell us that we should be his soft place to fall and should engage and immerse ourselves in C’s special interests every bit as much as he does. I don’t know what the answer is, but I know I’d heard enough proselytizing for a Friday afternoon and had to call “enough.”

     The Bible discussion inevitably turns into preaching. I’m used to C imposing his moral code on us – he’s a rules boy, after all – but not quite in this format. If you want to be disconcerted, try being preached at (I know it’s not grammatically correct, but he actually IS preaching AT you) by an almost ten-year old. No one is immune, except, it seems, my brother and sister-in-law. I’ve been waiting for that first “Have you been saved?” phone discussion, but it just hasn’t happened. Yet.

     So, have YOU heard the good word? No? Well, come on over to our house, we’ve got plenty to share.

     No, I’m not talking about the SEX talk. I’m talking about an equally important talk - the one where you tell your child he has a diagnosis. It’s something parents agonize about, plan for, and worry over. If you watch Parenthood, as we do, you watched Max’s parents absolutely botch their first attempt to explain Max’s autism to him. It was beyond bad. Our experience, however was the complete opposite. It was the most anticlimactic, non-event you could possibly imagine.

     We kind of pushed ourselves into having the discussion simply because we were afraid C would hear it somewhere else, a la Parenthood (where Max hears it brought up during a family fight), although hopefully not in such a dramatic fashion. We are an open book; C’s friends’ parents know, the neighbors know, random people at the park know. Doctors, teachers, the people at church. It was time, but we knew C wasn’t ready.

     You see, this child of ours is perhaps the least introspective person on the planet. It’s charming, at times, how unaware of himself - his actions, and the effect of those actions on others - C actually is. He is convinced the whole world loves him, and while he is incorrect in that assumption, his delightful unawareness means C is enthusiastic without care about what others think. There is no soul more uninhibited than C’s. He takes joy in the most mundane things and shows no qualms about sharing that joy, regardless of the consequences. Oh, yes, we’ve tried to redirect, calm, and make appropriate those happy outbursts, but there is no squelching it – social appropriateness be damned. C has no care, nor does he seem to understand, that he is often acting against the norm.

     C has his moments; he worries about not wearing a belt to school (despite having permission to not wear one) because the other kids will notice he is out of uniform. He worries about wearing a necklace to chew on because he worries no one else does that. But that’s as far as it goes. Someone doesn’t like him? No way, no how. He won’t hear of it. Impossible. C is not in denial, but rather he is just complete and utterly unaware.

     So what does one do with a child so clueless about his own special differences? You point them out, of course, gently. Remember, C, how difficult it was for you to learn to ride a bike? How much you struggle with handwriting? How much you hate it when a loud noise surprises you? “Yes, yes, and yes,” he said. And you know how awesome you are at math? How amazing your memory is? How much you like to learn each and every possible piece of information about each and every Pokemon? “Yes, yes, and yes.”

     That’s autism, C. That’s what makes you so special.

     “Okay. Can I go outside now?”

     Check, check, and check.

     Still, the result is the same, and ouch, does it hurt. It doesn’t matter how nice the kids are, how much money we pay, or how Christian the school is. C likes the kids - every single one of them. He considers them all friends, even ones who aren’t outwardly very nice to him. Yet it all comes down to one simple fact:  The kids just don’t like C. 

     This became painfully obvious today - I’m still crying, hours later - when I went in for lunch. I’ve been avoiding hanging out at school, and now I realize I just didn’t want to admit to myself that all of our effort meant nothing in the reality of the problem. C and I sat at the “special” table reserved for kids who have visitors. Last time I went in, C asked each and every boy in his class if they wanted to sit with him at the special table. I listened as each and every boy said no. This is a privilege, mind you, and every other time I see a parent in there, there are several other kids at the special table with the special kid and his or her parent. Yet they all said no. Today C didn’t even bother asking.

     While we sat there, C dropped something and asked a boy at the class table to pick it up since it was near him. The boy kicked it as far under the table as he could and C had to get down on the floor and under the table to get it. The boy laughed and pointed at him, and then the other boys joined in. It wasn’t overt and obvious or even particularly loud, and thankfully C didn’t even notice. Then C walked over to the class table to ask another boy a question. This was a boy whose house C went to this weekend – Mom arranged, of course. Clearly the boy was uncomfortable talking to C, and when C came back, he mentioned that as he left the boy’s house on Sunday, he whispered in C’s ear, “Don’t tell anyone at school that you came over this weekend.” C only mentioned this because he had just been talking to him. He often drops bomshells like this days later, not realizing they are bombshells at all. C clearly did not connect the comment to anything having to do with himself. “Maybe the other kids think his house isn’t nice? But that’s not true, because it is,” he said, clearly perplexed. When he told me, I fought back tears. Just get through lunch, I told myself, you can cry in the car.

     It was all summed up for me. How much longer can parents arrange playdates? When is C going to really figure out that these boys don’t like him? And given he probably has figured it out on some level, how must it feel to go to school five days a week with a bunch of kids who don’t want to be around you? While I sat and watched every boy in C’s class (except his one real friend, who was not there today) snicker and giggle and whisper about him after both of these minor incidents, I realized I’d been hiding from the truth.    

     I’d like to go to school and talk to these boys, because of all the schools C has been in, this is the one where I thought he stood the best chance of finding his place – these are good kids in a good school. I’m not sure what I’d say to them, really, because I wouldn’t want to make it worse. I can’t make them like him. But one thing I’d like to tell them is that while they may not like him, C sure likes each and every one of them. A whole lot.    

     This is when I remember what the developmental pediatrician who diagnosed C told us: “If you can get him emotionally intact through middle school,” she said, “he’ll find his niche and he’ll be fine.” And I wonder to myself, just how can we do that? Where is the place that will have kids who will both protect and nurture him? Where, where will he fit in? What to do with a child who is so social, so desirous of being around other kids, but who is clearly not liked by those same kids? Public school, charter school, private school, Christian school – it’s all the same, and none of it is right. 

      I don’t know what the answer is, and that is why I’m really crying this afternoon. I don’t really understand exactly why the kids don’t like C. I don’t really know where the place is that would be safe and good for him, or if it even exists. All I know is that I fear C’s wonderful little world will come crashing down someday when he puts all of the painful pieces of this puzzle together. And then it will be more than he can possibly bear.

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